How do women with epilepsy take decisions
about pregnancy?
About a third of the 456,000 people with
epilepsy in the UK are women of childbearing
age (16 to 45 years). Many of these women
may become pregnant whilst taking anti-epileptic
drugs. We know a great deal about the effect
of these drugs on the mother's seizures,
and more and more about how both the drugs
and the seizures affect the infant's growth
and future development, but there are still
unknown factors. It is not known how women
with epilepsy who are taking anti-epileptic
drugs weigh up the risks of having a miscarriage
or a disabled child (or any other "adverse
outcome of pregnancy") and arrive at
a decision about whether or not to become
pregnant, and further decide how to prepare
for the pregnancy.
Miss Janine Winterbottom at the
University of Liverpool and the Walton Centre
for Neurology and Neurosurgery has been
awarded an Epilepsy Research Foundation
Fellowship to gain a better understanding
of how women with epilepsy interpret information
about risk. Her study "Women with
epilepsy preparing for pregnancy; a qualitative
analysis of the perception and communication
of risk information" (for which
she was awarded £86,779 over
three years) will use focus groups and interviews
to look at how women with epilepsy perceive
information about pregnancy risk at different
stages of their reproductive lives, and
how they are involved in decision-making
when preparing for pregnancy. The study
will provide an account of their beliefs,
experience and feelings, all of which might
shape their reproductive behaviour. The
aim is to improve how information about
these risks is communicated. This has immediate
applicability to how these women are counselled
by their doctors, and how their epilepsy
care is managed leading up to and during
a pregnancy.
